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Colleen Connor and Nola Martin lead the University of Pennsylvania pulmonary hypertension (PH) support group in Philadelphia. About 12 people regularly attend its remote meetings, which take place monthly.

Nola, the youngest of eight children born and raised in Philadelphia, was diagnosed with pulmonary arterial hypertension (PAH) due to scleroderma in 2010.

She works in a charter school, where she helps students and their families who face homelessness. She discusses why she initially joined the support group, what motivates her to volunteer and the benefits of participating in support groups.

Colleen of West Chester, Pennsylvania, lives with her husband Shawn, son Ryan, daughter Keira and dog Cody. She was diagnosed with PAH in November 2007 after begging a cardiologist to perform an echo.

Since then, she has volunteered for the Pulmonary Hypertension Association (PHA) in multiple roles, including as a current member of the Board of Trustees. “PHA gave me so many resources and hope when I was utterly lost upon diagnosis,” she says.

By Nola Martin

My niece and her three boys are a big part of why I am a PHA support group leader and why I initially joined the support group. When I was hospitalized for the first time with pulmonary hypertension (PH), I had to be away from my niece’s boys for two weeks.

When I called from the hospital, the youngest asked why wasn’t I home and burst into tears. That broke my heart, and I vowed to do everything I could to fight.

When I was diagnosed, I had never heard of PAH or scleroderma. After the doctor said there was no cure, everything became a blur, and I thought, “I am too young for my life to be over.”

I did a Google search for PH, which was a huge mistake. Everything I read made me believe I had a maximum of three years to live.

Joining the PHA support group provided me with valuable, accurate information and connected me with people who understood what I was going through without judgment.

Then it became so much more. We weren’t just support group members; we became friends and family who check up on one another and look forward to seeing each other at meetings.

We celebrate the milestones in each other’s lives, including lung transplants, finding medications that work better, improved walking distances on the six-minute walk test, and no longer having to wear oxygen.

We get to know family members, caregivers and close friends. These things inspire me to fight and do my part to find a cure.

I once met an Uber driver who was diagnosed with PH and was afraid to go back to the doctor after her initial diagnosis. By the end of the ride, she gave me her phone number and promised she would go the PHA website to find a PH specialist.

My inspiration to keep fighting is my home family, work family and support group family.

By Colleen Connor

The first thing I did as a volunteer was advocate. I wanted the public to know that PAH could happen to anyone, including a young mom. Our kids were 3 and 7 years old when I was diagnosed.

I attended PHA’s congressional luncheon in 2009. At that point, the Tom Lantos Pulmonary Hypertension Research and Diagnosis Act had been introduced in the House of Representatives but not the Senate.

I shared my story in a meeting with Sen. Robert Casey and asked him to introduce the PH bill in the Senate. By the time the lunch program ended, Sen. Casey’s staff had called to say that he would introduce the legislation, which he did a few days later.

In my role on PHA’s Board of Trustees, I serve on the governance and development committees. My family and I organized Philadelphia’s Hope for a Cure PHA Gala in 2013, 2015 and 2017. I also volunteer for Unite for HER, a nonprofit that supports women with breast and ovarian cancer.

The most rewarding part of leading a PHA support group is working as a team with Nola Martin and Chris Archer-Chicko, CRNP, MSN. Chris started the group, led it for years and is still involved. I enjoy connecting with our support group every month. We have become a family and are each other’s inspiration.

My mom inspires me to volunteer. She and my dad raised eight children, and I can’t say enough about my husband, children, parents, siblings, their spouses and families, and my in-laws. I’ve always drawn on their energy and support.

My family members are terrific PHA supporters. They advocate with me in D.C. and attend conferences and galas. I never have to figure anything out alone. My mom is amazing. If I become half the woman my mother is, I will have succeeded.

As the COVID-19 pandemic continues, the Pulmonary Hypertension Association (PHA) continues to host all support group meetings virtually.

Virtual meetings help the community remain connected, supported and informed – without the risk of transmitting or contracting the virus. As the pandemic wore on, the benefits of remote meetings evolved from more than ways to prevent virus transmission.

Now people can join from anywhere, as long as they have internet or phone access. And they can join any group, not just the closest one, which means more opportunities for support, learning and meeting new friends.

Here are some advantages attendees report:

No weather worries

In Edmond, Oklahoma, the weather is harsh in the early months of the year. Nicole Fitzgerald finds it tough to ask people to travel to in-person meetings. “The virtual meetings are a great solution to that,” she says. “We enjoyed being able to see one another after so long. And because we all have to be so careful, just seeing and talking to people outside of our own bubbles is a nice change of pace.” No car needed

Pre-pandemic transportation challenges often prevented Bonnie Patricelli, of Clementon, New Jersey, from attending in-person meetings. She no longer has to worry about getting to meetings while juggling work and caregiver duties. “I am glad to see so many friends online,” she says.

No geographic barriers

People can join from anywhere as long as they have internet or phone access. And they can join any group, not just the closest one. Many people who never attended in-person meetings because they were homebound or because they lived too far away have become part of support group communities.

“Because we are so spread out, we found the response to having a virtual meeting much bigger,” says Nikole Nichols, a leader of the St. Mary’s Regional Medical Center support group in Reno, Nevada. “Many more people who would not have traveled the distance for an in-person meeting were excited to attend a virtual meeting.” The group serves a large region with limited access to PH specialists.

In Corcoran, California, Gerardo Estrada, had never talked to another PH patient outside of his doctor’s waiting room. So appreciates the virtual connections he’s made. “It’s hard enough dealing with pulmonary hypertension, and COVID-19 makes it even harder,” he says. “At the virtual meeting, I was able to get answers about COVID-19 from a professional. And I enjoyed hearing from other patients on how they are dealing with their PH. I’m looking forward to the next virtual PH meeting.”

Provides emotional support while physically distancing

“I have found the meetings enormously helpful,” says Nancy Zeppa of Burlington, New Jersey. “It is great to see and hear from new and old friends. In this bizarre world we are living in, it’s safe and emotionally supportive.”

Reduces feelings of isolation

Many people have felt increased isolation and anxiety over the past year because of the pandemic, increasing their need for connection through support groups. Since virtual meetings have become safe, effective ways to connect, many patients use them to combat isolation and anxiety related to the virus.

For Terry Jones of Tampa, Florida, COVID-19 precautions made life lonelier. But frequent support group meetings help him cope. “Our PH support group meets every few weeks, and it helps a lot.”

Similarly, Amanda White of Millbury, Massachusetts, relies on the meetings to combat isolation and anxiety caused by the pandemic. “I appreciate the move from in-person to virtual meetings. I like the support while being able to stay safer at home.”

Chris Archer-Chicko, CRNP, M.S.N., says the pandemic inadvertently led to new ways to interact.

“We don’t know how long we will have to adjust to this way of living, says Chris, of the University of Pennsylvania’s Lung Center. “This is a wonderful opportunity to keep the PH community connected.”

Find an upcoming meeting at PHAssociation.org/supportgroups. When you RSVP for a meeting, the PHA support group leader will send instructions on how to join by telephone, smart phone, tablet or computer.